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5 Findings and Recommendations DISCUSSION VA has a large health care system, and as such, it not only reaps the benefits of but is also subject to the strains and limitations of any large organization. VA facilities run the gamut from the small rural primary care facility to the large urban tertiary care complex. It was for this system that an effort was undertaken to develop and implement a clinical diagnostic program that would identify the health problems of those who served in the Persian Gulf War and that could be implemented in each facility, regardless of its size. That effort was begun immediately upon the cessation of hostilities and drew upon lessons learned from past efforts to respond to the needs of Vietnam veterans. A great deal of time and effort was expended to develop and implement a program that would provide high-quality diagnostic services to those deployed to the Persian Gulf. However, time brings new information and experiences that serve to indicate improvements that can be made. Change is part of a natural evolutionary process in developing good screening instruments and processes. This is not to imply that the first efforts were inappropriate but, rather, that time leads to new knowledge, which leads to the ability to improve. Such is the case with the VA Persian Gulf protocol. Over time, information has been obtained which can be used to help identify areas where change in the protocol and its implementation will be of benefit. This report is intended to assist VA in that attempt. The conclusions and recommendations reported here are not meant to serve as an indictment of the efforts of the VA providers who are working to provide 33

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34 ADEQUACY OF THE VA PERSIAN GULFREGISTRYANDUCAP high-quality services to the veteran population. Rather, as an operational system, the Persian Gulf Registry and UCAP provide the opportunity for observation, evaluation, and feedback aimed at improvement. That is what the committee has done-observed, evaluated, and reported. The following section provides findings and recommendations, organized as follows. First, the committee provides its recommendation on the overall process to be used in a program focused on diagnosing Persian Gulf veterans' health problems. This is followed by specific recommendations regarding the elements of the process, its implementation and administration, and the quality of services rendered. Next come recommendations related to outreach efforts to veterans and provider education. Broad recommendations appear in boldface type, with subentries indicating recommendations following from these broader recommendations. DIAGNOSTIC PROCESS The diagnostic and referral process specified in VA Manual M-10 is laid out as a two-stage protocol. The protocol specifies that if, after an initial history and physical with minimal laboratory testing (Registry; Phase I) the veteran does not receive a diagnosis, he or she is referred to UCAP (Phase II) for specialist consultation and testing. Division of the diagnostic process into two phases is, however, an artificial division which does not accurately reflect the way in which medicine is traditionally practiced. The committee found that the diagnostic process followed in some facilities does not adhere to the written protocol but is, instead, more clinically driven. That is, evaluations as carried out in some facilities are often tailored to the symptoms and complaints of the patient, not blind adherence to the written protocol. Phase I evaluations in such facilities are frequently supplemented by selected consultations and tests from Phase II (e.g., the Registry provider does not wait until a Phase II designation to order pulmonary function tests if the patient complains of shortness of breath). It also appears that the entire Phase II protocol is not necessarily implemented in some facilities if a diagnosis that accounts for the primary complaints of the veteran can be arrived at without the full workup. Although it is encouraging that providers are using their clinical judgment to evaluate veterans who present with symptoms, such practices result in confusion about where the patient is in the diagnostic process when compared to the written protocol mandated by VA. The current differentiation between a Phase I and a Phase II evaluation varies from facility to facility, that is, it depends on the facility in which a patient is examined rather than, as the protocol specifies, on whether the patient has received a diagnosis that explains his or her significant symptoms. Such variation introduces the problem of

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FINDINGS AND RECOMMENDS TIONS 35 inconsistency in data recording and reporting across facilities, which, in turn, works against achieving one of the purposes for which the system was developed, that is, to identify previously unrecognized diagnostic entities that could provide an explanation for the symptoms commonly reported in Persian Gulf veterans with unexplained illness. The committee believes that the desire to implement a uniform approach to the diagnosis of health problems in Persian Gulf veterans is admirable and should be encouraged. In order to accomplish this goal, however, the committee believes that several changes need to be made in the system. First, the system needs to be conceived of as a diagnostic pathway or process along which every patient flows. The committee believes that the following pathway (see Figure S.1) provides the appropriate framework for clinical diagnosis and referral. 1. The committee recommends that the diagnostic pathway, illustrated in Figure 5.1, for the evaluation and referral of Persian Gulf veterans' health be adopted and followed by providers in each VA facility. Following this pathway, a Persian Gulf veteran entering the system with no complaints would be given the initial evaluation as specified above, and if nothing was found upon examination and testing, that veteran's evaluation would stop. A veteran presenting with the complaint of diarrhea would be given the initial evaluation as specified above with the addition of such tests as stool examination and endoscopy. If the results of the examination and testing were consistent with a diagnosis that explained the complaints (for example, intestinal parasites), that patient's diagnostic evaluation would stop and she or he would be referred for treatment. If, however, the results were not consistent with the complaint or if something unexplained appeared as a result of the tests or the examination, the patient would continue on the diagnostic pathway for additional evaluation and testing. Eventually, if a diagnosis cannot be determined, the provider must decide whether (1) the symptoms or problems are serious enough to cause disruption in the patient's life and therefore warrant continued evaluation at a special center or (2) symptoms and complaints are not causing disruption in the patient's life and therefore the patient should receive periodic reevaluations to determine if his or her condition changes over time. The major differences between the current written protocol and the pathway recommended by the committee are (1) the primary care provider is encouraged to order additional tests and consultations beyond those specified in Phase I for a patient, based on symptoms and complaints, without the requirement of initiating a Phase II evaluation, (2) patients should be referred to a designated referral center only when the resources necessary to provide appropriate evaluation of presenting complaints are unavailable at the originating facility, and (3) there must be a defined approach to be used for patients who remain

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- 3 36 ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP undiagnosed or whose major symptoms have not been accounted for (for example, periodic reevaluation, treatment, or referral to a referral center). No symptoms and negative findings IN1MAL EVALUATTON Primary Care Provider 1 1 1 Definable Definable disorder consistent disorder inconsistent Unexplained Unexplained L widl symptoms | l with symptoms I Findings | ~symptoms ~ r Refer for treatments periodic evaluation - 1 r SPECTALTST EVALUATION ! 1 1 1 Definable Definable disorder consistent disorder inconsistent with symptoms with symptoms . 1 - Refer for treatment, periodic evaluation _ _ ,_ Unexplained Unexplained findings symptoms PROFESSIONAL DECISION Refer for treatment, periodic reevaluation required Refer to special center for further evaluation | FIGURE 5.1. Pathway for diagnosing health problems of Persian Gulf veterans in the VA system.

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FINDINGS AND RECOMMENDATIONS 37 Adoption of the described pathway necessitates specific changes to the protocols for conducting the Registry and UCAP examinations. A patient's position in the pathway is dependent upon whether the patient has received a diagnosis that accounts for his or her major symptoms. Although that was the apparent intent of the original protocols, the distinction between the Phase I Registry examination and the Phase II UCAP examination resulted in confusion among providers about which phase was being conducted and where information should be entered on the data recording form. If laboratory tests beyond those specified in the Phase I Registry (i.e., CBC, urinalysis, and blood chemistry tests) were ordered, did that mean that the patient was in Phase II? If a consultation with a neurologist was ordered, did that mean that the patient was in Phase II? Those questions are no longer relevant or important in the new diagnostic pathway. l.a. Use of the pathway eliminates the need to designate phases of evaluation; therefore the distinction between Phase I and Phase II (with all accompanying specifications for specialty examination and referral) should be eliminated. l.a.(l) The Persian Gulf Registry Code Sheet needs to be redesigned to reflect the elimination of Phase I and Phase II from the protocol. l.a.~2) The redesign should accommodate the need to aggregate data from the original data collection system with that of the redesigned system. A minority of patients with persistent symptoms will not receive a definitive diagnosis. Some of these patients could have disease processes that cannot be diagnosed presently because of limitations in scientific understanding and diagnostic testing. They may not benefit Tom farther evaluation now but may receive benefit from reassessment at a later date. This undiagnosed patient cohort, some of whom are designated as having an "unexplained illness," will contain a diversity of individuals who will require monitoring and periodic reassessment. l.b. VA should plan for and include periodic reevaluations of these undiagnosed patients' clinical needs. The pathway specifies an initial evaluation by a primary care provider for the Persian Gulf veteran. In traditional medical practice, the comprehensive clinical evaluation of a patient presenting to any physician includes a complete history, physical examination and laboratory tests appropriate to the presenting complaints or clinical problems. This should be no different for Persian Gulf veterans. In addition, some veterans may not be experiencing difficulties but may wish to participate in the program. An initial evaluation with a basic set of

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38 ADEQUACY OF THE VA PERSIAN GULFREGISTRY AND UCAP elements should be given to both groups of patients, with additional tests performed as necessary based upon presenting complaints for those veterans with clinical problems or complaints. The results of that initial evaluation will determine whether the patient proceeds further in the diagnostic process, as reflected in the recommended clinical pathway. The committee believes that VA should consider using an expanded set of tests and additional exposure questions for the initial evaluation. 2. The committee recommends that both patients presenting with and those presenting without complaints should receive an initial evaluation which includes (1) a comprehensive history and physical as defined in the American Medical Association publication Physicians' Current Procedural Terminology (1998), (2) a very specific set of questions related to the Gulf War setting, and (3) a standardized laboratory evaluation. 2.a. A national panel of experts should be convened to (1) review the current set of Gulf War-related questions contained on the Persian Gulf Registry Code Sheet to determine whether additions or deletions are needed, (2) identify the set of standardized laboratory tests to be used in the initial evaluation, and (3) conduct periodic reevaluations of the usefulness of each element in the initial evaluation. Specific Gulf War-related questions to which veterans are asked to respond include the exposure questions contained on the Persian Gulf Registry Code Sheet (see Appendix H). Given the importance placed by veterans and clinicians on the potential contribution of exposures to health complaints of Persian Gulf veterans, the committee decided to examine the exposure questions in detail. In some facilities the questionnaire portion of this Code Sheet is given to the veteran to complete as a self-report form, whereas in other facilities this is completed during an interview with the provider. The information collected with this questionnaire is not intended to be used for research purposes. Rather the purpose of the questionnaire is to provide information to the clinician that might be used to assist in the diagnosis of health problems. It is Important, therefore, that the patient understand what is being asked of him or her so as to provide the clinician with accurate information. With regard to Question 18 and its subsections, covering smoking and war- related toxic exposures, the committee believes that these questions are appropriate if administered by an interviewer, but not optimal as a self-report. Since this section is frequently handed to the veteran to be filled out as a self- report form, the extent to which responses are checked by an interviewer is not clear.

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FINDINGS AND RECOMMENDATIONS 39 The instructions to skip over certain questions on items 18A to 18F (the smoking questions) are also confusing. The problems with questions 18G to 18Z have to do primarily with comprehension. Some of the options are not explained, so the veteran may respond negatively even if he or she has been exposed. For example, CARC is spelled out, but no description is provided. Likewise, exposure to depleted uranium and mustard gas may not be acknowledged if the veteran does not know how to tell if he or she might have been exposed. Although "don't know" is a valid option, the committee assumes that the examining physicians would want to know as much as possible about probable exposure. For this reason, the veteran should be able to discuss these possible exposures. The primary problem with the questions related to traumatic experiences (items l9A to l9F) is that the questionnaire may miss important experiences or stressors that can affect physical and mental health, and about which the physician should know when doing the patient workup. Research has shown that stressors have been associated with major depression, substance abuse, and a variety of physical health problems, including immune system dysfunction. With men and women serving together in a difficult situation such as war, a unique series of concerns emerges regarding the incidence of physical or sexual harassment or assault or both. Chapter 1 of VA Manual M-10, Part III identifies some special health needs of women veterans of the Persian Gulf including the long-term consequences of rape, other sexual assault, sexual harassment, exposure to combat during military service, or mistreatment as a prisoner of war. However, there is no specific reference to rape or abuse in the protocol history, and there is no routine evaluation of these activities in the absence of "reproductive health problems." Veterans have indicated that seeing others dead (including Iraqi soldiers) is a very stressful experience. There may have been other frightening experiences that were relatively uncommon but that would be very upsetting and stressful if one were exposed to them. There needs to be a way for veterans to report traumatic or stressful experiences to the clinician so that these experiences can be taken into account in evaluating a veteran's health complaints. Even less classically traumatic experiences such as harassment may play a role in health outcomes. An open- ended questionks) would also be useful for nonnormative, yet highly stressful, experiences. VA has a number of research centers with trauma specialists who could assist with the specific wording of such questions. Examples of such questions are given in Appendix 0, some of which are taken from Southwick et al. (1997~. 2.b. The section on traumatic experiences on the Persian Gulf Registry Code Sheet (Question 19) should be expanded by the addition of (1) specific questions inquiring about experiences not presently assessed that

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40 ADEQ UP CY OF THE VA PERSIAN G ULF GISTS Y AND UCAP have been reported by Persian Gulf veterans, and (2) an open-ended questioners) that allows the veteran to report idiosyncratic or particularly distressing experiences that may play a role in the veteran's current health status. 2.c. The questionnaire should be administered in an interview format. If the information on environmental exposure, immunizations, and exposure to traumatic situations cannot be collected in an interview format, all yes and don't know responses should be reviewed with the patient in a face-to- face evaluation. In addition to discussion of the exposure questions, the committee focused on examining the list of the consultations and tests required by the UCAP protocol if a veteran presented with specific symptoms. At the time of its development the VA protocol was an appropriate attempt to collect a wide variety of information that covered all known potential health concerns that could affect Persian Gulf veterans. Much has been learned since it was first implemented. It is now known that certain symptoms (e.g., fatigue, memory loss, severe headaches, muscle and joint pain, and rashes) are commonly reported by these veterans. Now that this additional information is available, areas upon which to focus efforts at identifying and diagnosing health problems can be discerned. One mechanism that can aid in these efforts is the develop- ment of clinical practice guidelines. Great strides in methods for developing clinical practice guidelines have been made in the past few years. Clinical practice guidelines are defined as systematically developed statements that assist the practitioner and the patient in making decisions about appropriate health care for specific clinical circumstances (Field and Lohr, 1990~. Once developed, clinical practice guidelines can be used to assist clinical decision making by patients and practitioners, to educate individuals or groups, to assess and assure the quality of care, and to guide the allocation of resources for health care (Field and Lohr, 19929. There are two major approaches to the development of practice guidelines. The first approach, the evidence-based approach, emphasizes the significance of the science base for guidelines and the use of quantitative modeling for estimating and comparing outcomes. The other approach emphasizes professional judgment in areas in which the science is weak or nonexistent (Field and Lohr, 1992~. It may be that for some of the conditions being seen in the VA Persian Gulf program, a melding of experience and judgment with scientific evidence, where it exists, is the best possible approach. Efforts are already under way for the development of practice guidelines in the VA health care system. In January 1997, VA distributed to all of its facilities clinical guidelines for major depressive disorder, posttraumatic stress

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FINDINGS AND RECOMMENDATIONS 41 disorder, and addictive disorder (Veterans Health Administration, 1997~. These guidelines were developed by and for VA clinicians. 3. The committee recommends that VA, to the extent possible, use an evidence-based approach to develop and continuously reevaluate clinical practice guidelines for the most common presenting symptoms and the difficult-to-diagnose, ill-defined, or medically unexplained conditions of Persian Gulf veterans. These guidelines need to be specific, comprehensive, and flexible enough to be useful in everyday clinical practice. Multidisciplinary groups of those providing care should be involved in the development process. The Persian Gulf War differed from previous U.S. military engagements in that 7/0 of those deployed (about 49,000) were women. Potential exposure by this group of women to stressors, reproductive system toxicants, and other health hazards may produce disorders distinct from those seen in prior conflicts or among the men who served in the Gulf. The committee believes that VA has a unique opportunity to examine the health of women deployed under such circumstances. Therefore, there should be increased examination of and attention directed toward women's health issues. The current Registry and UCAP do evaluate infertility or subfertility among males and females, miscarriages, stillbirths, and congenital malformations. The evaluation of genitourinary or other hormonally related disease is limited, however. Evaluation of this area in the current system is symptom- driven, allowing for errors of omission to be made in the absence of patient awareness. In addition, as discussed above, the special health needs of Persian Gulf veterans related to physical or sexual harassment and assault should be systematically addressed. 3.a. Clinical practice guidelines for the evaluation and management of women's health issues should be developed. During the site visits and in the VA responses to requests for input, it was noted that no mechanism for providing feedback on the adequacy of the protocol and its use is available. For example, the current protocol states that every patient who is not diagnosed after Phase I and who presents with headache is to undergo magnetic resonance imaging of the head and receive a lumbar puncture. However, lumbar punctures are rarely ordered. Feedback from providers on the usefulness of the tests recommended for the diagnostic process and on the clinical practice guidelines once they are developed would provide important information on what changes, if any, should be made in the evaluation process.

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42 ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP 3.b. VA should develop a formal mechanism that enables practitioners to provide feedback on the practice guidelines and the diagnostic process used in the VA clinical program for Persian Gulf veterans. IMPLEMENTATION AND ADMINISTRATION The committee focused its examination of the implementation and administration of the Registry and UCAP on four elements that it believes are of prime importance to the adequate functioning of the program. These four areas are (1) referral for specialty consultation, both within and across facilities, (2) quality of services provided, (3) patient satisfaction, and (4) data collection and reporting. The following sections discuss the committee's findings and recommendations for these four areas. Referrals According to information received by the committee, referrals for specialty consultation or to a Referral Center present problems. Within facilities, consultant practices are often booked weeks in advance, resulting in long delays for specialty services. Workup and consultant appointments are often at the convenience of the clinic or specialty service, without consultation with the patient about his or her availability. Appointments may be spread over days or weeks, requiring patients to return frequently to the VA facility. For all veterans this can be a lengthy and time-consuming process. For the employed veteran, this can create additional difficulties related to missed work, missed pay, and poor employee evaluation. In addition, once specialty appointments are scheduled and the veterans are seen, the referral specialist is frequently unaware that the patient is a Persian Gulf veteran or the specialist has little or no experience with the particular needs and concerns of this group of patients. This may create the perception that the care being provided is less than adequate, whether or not such is the case. It is also the case that veterans undergoing evaluations at a tertiary level often have unrealistic expectations of the process and the outcome of the visit. They are unaware that many of the same questions and tests that they have already undergone will be repeated and that the process is extremely time- consuming. This open results in frustration and anger, exacerbating an already sensitive situation. One approach to addressing this problem is the use of clinical pathways which are clinical management tools that specify the various activities involved in a project from start to finish and the amount of time anticipated to complete each ofthe activities (Hoffman, 1993~.

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FINDINGS AND RECOMMENDATIONS 43 Clinical pathways organize, sequence, and delineate the timing of the major patient care activities and interventions of the entire interdisciplinary team for a particular diagnosis, procedure, or process, defining key processes and events in the day-to-day management of care and identifying expected outcomes. They should be developed locally, because they are specific to the particular setting and the team who uses them (Veterans Health Administration, 1997~. 4. The committee recommends that the process and procedures for referral be modified. 4.a. In those facilities where specialist consultations are provided, certain individuals within each specialty should be designated as the one~s) who will provide the consultative services to Persian Gulf veterans. Designated specialists should receive initial orientation concerning Persian Gulf War-related medical issues in their area of expertise. 4.b. Clinical pathways should be developed to specify the events and processes involved in referrals for specialty consultation. Facilitation of the workup for Persian Gulf veterans is an important consideration. The evaluation should be done in a manner that is as timely, efficient, and convenient as possible. If travel, distance, time off from work, or other obstacles make completion of the evaluation as an outpatient too onerous for a given veteran, then preplanned, rapid inpatient evaluation may be considered. 4.c. In the case of an inpatient evaluation, a site-specific clinical pathway should be used to facilitate the timely and efficient evaluation of patients. Referral to another facility presents additional problems, for both the veteran and the practitioners. For the veteran, referral to another center for specialty services often creates problems related to travel, time off from work, and family considerations. For the providers, there is frequently difficulty related to initial contact with the referral facility, unreturned calls, and an inability to obtain copies of reports. There may also be a lack of communication between the originating facility and the referral facility regarding proposed treatment and follow-up In addition, there appears to be a great deal of inconsistency from facility to facility in terms of when it is deemed appropriate to refer a veteran for this tertiary level of evaluation. 4.d. The diagnostic pathway should specify that a patient be referred to another facility for evaluation only when the resources necessary to

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44 ADEQUACY OF THE VA PERSIAN GULF REGISTRYAND UCAP provide appropriate evaluation of the patient's presenting complaints are unavailable at the originating facility. 4.e. VA should develop a transfer protocol that specifies procedures for initial contact and scheduling as well as the materials and processes necessary for a transfer, for example, a full copy of the veteran's record to date including all laboratory tests and consultations, the differential diagnosis, and a procedure for the transfer of records from the tertiary institution to the originating provider upon completion of the diagnostic workup. Quality There is a great deal of interest in learning more about the quality of care that Persian Gulf veterans are receiving in VA facilities. Although the com- mittee believes that, overall, the clinicians involved in the VA Persian Gulf Registry and UCAP examinations are practicing medicine according to acceptable standards, there does not appear to be across facilities a systematic approach to documenting the quality of care provided to Persian Gulf veterans or to identifying areas where improvement is needed. VA has developed procedures for what it terms the Quality Management/Assessment Monitor (see Appendix K). According to the manual, this form (VA Form 10-9009C-1) is to be used by VA medical centers "to assess and monitor the appropriateness of medical care being provided" through the Persian Gulf program. The form is to be used to abstract information from the charts of at least a 10% sample of all Persian Gulf Registry physical examinations conducted at each facility. Unfortunately, the form only collects such information as whether an examination was done or ordered, whether laboratory results were obtained, and whether follow-up letters are in the record or were mailed to the veteran. This information does not represent an adequate assessment of the quality of care provided to Persian Gulf veterans. In 1990, IOM defined quality of care as "the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge." (Lohr, 1990~. Traditional quality assurance programs examined the structure within which care is provided, the process for providing care, or the outcomes of care in an attempt to identify the outliers or "bad apples." Current approaches focus on perfonnance improvement and are based on a set of principles for implementing change. Their aim is to involve practitioners in the use of nonpunitive tactics for quality assurance that result in more effective changes and improvements to the system than was the case with traditional approaches that were aimed at identifying the practitioners with deficiencies.

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FINDINGS AND RECOMMENDA TIONS 45 The principles for performance improvement models emphasize the relationship between the partners in the health care transaction, the fact that errors are more often the result of defects in the system rather than individual deficiencies, the use of statistical and scientific precepts and techniques, reliance on self-improvement as opposed to external regulation, standardized processes, the provision of feedback to practitioners on their pattern of practice as compared to that of their peers, a visible commitment to quality by top leadership, and a striving for continuous improvement as opposed simply to the achievement of preset goals (Field and Lohr, 1992~. The development and use of clinical practice guidelines, as recommended earlier in this report, can be an important tool in a program for continuous quality improvement. Such guidelines can clearly define what is appropriate care, what are acceptable outcomes, and the contributions of practitioners and patients to those outcomes. These guidelines can be used to help structure the medical review criteria used to collect data on how the system is operating. Additionally, the participation of a multidisciplinary group of providers in the development of clinical practice guidelines increases the likelihood that needed changes will be more readily accepted. 5. The committee recommends that VA should establish an evaluation feedback mechanism that includes the elements of a performance improvement system. Patient Satisfaction The VA health care system, as is the case with any health care system that diagnoses and manages medical problems, must attend not only to objective outcomes (e.g., morbidity and mortality) but also to more subjective ones such as patient satisfaction. In fact, the measurement of patient satisfaction, as pioneered by the Medical Outcomes Study (Rubin et al., 1993), has become one of the most widely used and important outcomes both in the clinical arena (e.g., in assessing the success of interventions and other aspects of health care delivery) and in the health services research arena. The many questions that have arisen regarding the health consequences of the Persian Gulf War experience, coupled with widespread publicity on a myriad of potential adverse medical outcomes, make patient satisfaction a critical component of any evaluation of the adequacy of the UCAP. VA has implemented a well-developed and structured approach for assessing general patient satisfaction with the care provided at VA facilities. However, no system specifically addressing the substantial numbers of issues and concerns specific and relevant to Persian Gulf veterans or the special Persian Gulf diagnostic program is in place.

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46 ADEQUACY OF THE VA PERSIAN GULFREGISTRY AND UCAP 6. The committee recommends that VA design and implement a brief yet comprehensive questionnaire to survey patient satisfaction with the special program for Persian Gulf veterans. An example of the kind of instrument that might be developed can be found in Appendix P. Data Collection and Reporting An adequate and accurate data collection and reporting system is crucial to the understanding of Persian Gulf veterans' health problems. One explicitly stated purpose of the VA Persian Gulf Registry and UCAP is the creation of a registry that contains medical and other data on Persian Gulf veterans. This registry would assist in identifying previously unrecognized major diagnostic entities that could provide an explanation for the symptoms commonly reported in Persian Gulf veterans with unexplained illnesses (VA Manual M-10, Part III, Chapter 3, page 3-1~. Toward that end, VA has established a database that is meant to be comparable and retrievable across VA health care facilities. These data are not, however, intended to be used for scientific research, nor are they adequate for the conduct of scientific research. Because VA has only partially automated inpatient record-keeping, current on-line retrieval of data is not possible. However, VA has plans for construction of a computerized database for outpatient records. This should facilitate the review of any data collected through the Persian Gulf program. Data collection and reporting should, in general, be completed by using standardized and field-tested instruments. The data should be recorded on forms that are easily computerized. Individuals completing the reporting forms should be trained in how to do so to ensure standardization of the quality of data collected across sites. Any data entry should be done in a systematic fashion, with routine error checking involved, and double entry should be used whenever possible. Error rates should be checked and reported. Frequent data quality meetings across VA sites would be advantageous for ensuring standardization. Finally, the goals of all data collection and data reporting must be explicit and must be the guiding principle behind their development. That is, each data collection system and each system of reporting must be completed with specific goals in mind. This will provide a means for the evaluation of the success and of the strengths and weaknesses of this approach. The Persian Gulf Registry and UCAP have been established by VA with the intent of implementing a uniform and consistent evaluation across facilities. Data are available; that is, medical records of Gulf War veterans are complete and have been recorded. However, with respect to the application of the medical protocols, standardization and reporting are problematic.

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FINDINGS AND RECOMMENDATIONS 47 As discussed earlier, current evaluation of the patient tends, in many facilities, to proceed along medically indicated lines rather Man being strictly protocol-driven. Thus, it is clear that there is little consistency with respect to designation of phase of evaluation. Such variation hampers evaluation efforts based on these reported data. Until the national diagnostic pathway has been implemented, Phase I and Phase II eliminated, and the Code Sheet revised to reflect such changes, it is anticipated that this variation will continue. The committee found that there was variation across sites in the diagnostic categories that practitioners used to categorize patients' health problems. Providers at some facilities used such diagnostic categories as chronic fatigue syndrome and fibromyalgia, while providers at other VA health facilities did not. Such variation in the use of diagnostic categories has implications for the consistency and accuracy of data collection and reporting. Further, the method used to determine primary versus secondary diagnoses varies. While a primary diagnosis is to be recorded on the code sheet, no instructions are given regarding how to determine which diagnosis is prunary. The committee found that some physicians list a medical diagnosis as primary over a psychiatric diagnosis. Other physicians do not follow this custom. Such variation introduces uncertainty about the consistency of the data. 7. The committee recommends that VA facilitate the consistency of data reporting in the following ways. 7.a. There should be agreement nationally, within VA, on the definition and use of specific diagnostic categories. 7.b. Clear decision rules for determining and recording the primary and the secondary diagnoses should be developed. The committee also found that there was no opportunity for updating the database information gathered for each patient. That is, intake questionnaires and data gathered at the presentation of the patient cannot be updated later in any systematic fashion. This is true for both patients who receive a diagnosis and those who remain symptomatic but undiagnosed. A patient's health status can and does change over time, and the system must have some way of capturing that new information. 8. The committee recommends that there be established a mechanism by which individual patient information can be updated and incorporated in the database in a systematic fashion. This includes revision of original diagnoses and revision of status including data that are related to life style or demographics.

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48 ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP OUTREACH For Persian Gulf veterans to participate in the special program that VA has designed to address their health concerns, they must be aware that the program exists and know how to register for it. The committee commends VA for the extensive outreach efforts put forth to inform Persian Gulf veterans of the services available to them. As described earlier, the toll-free number (1-800- PGW-VETS or 1-800-749-8387) for those with questions about Persian Gulf health issues, the newsletters, the pamphlets, and the computer bulletin board (http://www.va.gov/gulf.htm) are designed to provide a number of venues through which veterans can obtain information. However, there does appear to be a lack of reliable, easily understood information for Persian Gulf veterans regarding exposures and their health consequences. This information needs to be readily accessible and available. 9. The committee recommends that VA develop informational pamphlets for veterans. These pamphlets could be placed in facility treat- ment areas and could address common concerns such as the purpose and process of the VA Persian Gulf program, health effects of low-level exposure to chemical warfare agents, research activities related to Persian Gulf veterans and their results-to-date, and so forth. When a veteran first visits a VA health care facility, she or he completes what is known as an intake form. Such forms in general use throughout the VA system are not designed to easily identify Persian Gulf veterans. Although intake forms request dates of active-duty service, no questions specifically ask whether the veteran served in the Persian Gulf War. Unless veterans so identify themselves, those performing the intake function would have to know about the VA Persian Gulf Registry and specifically ask about service in the Persian Gulf War. It is unlikely that this occurs, and therefore, an opportunity to identify veterans who may wish to participate in the program is lost. 10. The committee recommends that VA consider redesigning intake forms so that the veteran is asked to identify whether or not she or he was deployed to the Persian Gulf War (or any other specific engagement). PROVIDER EDUCATION One of the charges to the committee was to determine the adequacy of the provider education activities for those who participate in the diagnosis of Persian Gulf veterans' health problems.

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FINDINGS AND COMMENDATIONS 49 As discussed earlier in the report, VA has designed a number of programs to educate its designated Persian Gulf providers including interactive satellite teleconferences, quarterly national telephone conference calls, direct educational mailings, and an annual conference on health consequences of service in the Persian Gulf War. The committee was impressed with the high quality of these efforts, hopes that those for whom they have been designed avail themselves of the opportunity to participate, and believes that the audience who receives such education needs to be expanded. Although the designated Persian Gulf providers are given the opportunity to participate, other primary care personnel and specialists do not usually receive the materials nor do they participate in the educational programs. Some specialists appeared to know little about the VA Persian Gulf Registry and UCAP, had little or no orientation to the program, and were unable to identify whether the patients whom they saw were Persian Gulf veterans. Although a number of educational opportunities to learn about the program exist (e.g., the yearly national conference, quarterly newsletters, conference calls, and videotapes), participation in such activities appears to be limited to the designated Registry providers. 11. The committee recommends that primary care providers, in addition to the Registry practitioners, as well as the specialists who see Persian Gulf veterans, be provided the opportunity and encouraged to participate in the educational programs. 1 I.a. The audience for whom existing educational training activities are developed related to providing health care for Persian Gulf veterans should be expanded to include other providers involved in the evaluation process, for example, designated specialty consultants. The specialists with whom the committee spoke and those from whom the committee received input often felt frustrated that veterans sometimes appeared more knowledgeable about the latest Persian Gulf veterans' health issues and research results than they were. Many believed that such a lack of information could be interpreted as a lack of caring or a lack of expertise in treatment and could lead to patient dissatisfaction with the services he or she is receiving, even if those services were of high quality. This lack of knowledge undermines Persian Gulf veterans' confidence in the system, worsening patient satisfaction and heightening public concerns about the adequacy of the VA system for addressing the health issues of Persian Gulf veterans. The lack of in-depth involvement of the specialists also means that they do not have access to continuing medical education opportunities related to Persian

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so ADEQUACY OF THE VA PERSL4N GULFREGISTRY AND UCAP Gulf veterans' health issues and that they may not participate in an evaluation- feedback mechanism to determine the value of various parts of the protocol or system. The specialists are the ones ordering, providing, and evaluating the more sophisticated tests conducted during the evaluation process. They are in an excellent position to determine how appropriate or beneficial these might be for individual patients. Such feedback could be collated to look more closely at the tests that do result in some positive information about the nature of veterans' complaints. ll.b. VA should consider the following options for education of its providers: periodic team conferences (perhaps quarterly) to be held with all designated providers (including specialists) to discuss activities and findings and to provide updates on Persian Gulf issues and concerns; and development of site-specific clinical pathways by designated specialists and Registry providers. Reproductive issues have been addressed in the educational efforts of VA. Although these concerns seem to have been discussed, aspects of health unique to women have been given a lower profile. ll.c. Future educational efforts should place greater emphasis on women's health concerns. A tremendous amount of knowledge about the diagnosis and treatment of Persian Gulf veterans' health problems is being amassed in various sites around the country. It behooves VA to identify where and with whom this special expertise exists and to develop mechanisms whereby others can benefit from the lessons that have been learned. ll.d. VA should provide resources to establish a repository for the accumulated knowledge of, expertise in, and experience with the health issues and problems of Persian Gulf veterans. Specialists who possess such expertise should be identified and available for consultation by telephone, e-mail, or telemedicine connections with local providers in all VA facilities.